A matter of self-image: Girl takes Turner Syndrome in stride

NICEVILLE — As Kelsey Jones flipped through her teen Bible, she paused at a particular note in the book.

LAUREN DELGADO / Daily News

NICEVILLE — As Kelsey Jones flipped through her teen Bible, she paused at a particular note in the book.

“You are made in my image. You are worthy, not for what you do, how you look or what you own … but because I made you,” the note read, referring to Genesis 1:27.

She continued looking through the pink and green paisley book to point out passages with a similar theme.

“It doesn’t matter what you look like,” Kelsey said. “It matters what you think of yourself.”

The 12-year-old has accepted that she may never grow much taller than her current 4 feet, 4 inches.

Kelsey has Turner Syndrome, a chromosomal condition. She is missing a second sex chromosome.

Women with the condition can have a mix of different external and internal abnormalities. About one in 2,500 live female births have the condition, according to the Turner Syndrome Foundation.

When Kelsey was 5 years old, her grandmother Cindi Jones spoke to a doctor about Kelsey’s boxy hands and “Flintstone feet.” A few tests found that she had Turner Syndrome.

Cindi always has tried to be straightforward and positive with Kelsey about the effects.

“You don’t want to let it get you down,” Cindi said. “That’s when you fail.”

Kelsey’s kidneys are fused together into a horseshoe shape, barring her from playing contact sports. She also has a mitral valve prolapse, a heart condition that necessitates regular trips to the cardiologist for monitoring.

She’s also deaf in her right ear.

Kelsey always spoke of having kids of her own, so Cindi waited until she was older to tell her she may be infertile. Even then, they kept it positive.

“There’s always adoption,” Kelsey said with a shrug.

She takes estrogen hormones to go through a normal puberty.

She stopped taking growth hormone shots after a large mole on the side of her right eye developed Stage 4 melanoma over a year ago.

“I always tell her that God never gives you more than you can handle,” Cindi said. “Sometimes he tests it, though.”

Surgery to remove the cancer left a round scar on the side of her face. In the future, a skin expander may be placed on the side of her neck to eventually grow enough skin to cover the scar.

She underwent chemotherapy and had a port placed in her chest to deliver medicine directly.

She was declared cancer free in February. The family celebrated with homemade pizza, ice cream and the movie “Wreck-It Ralph.”

The experience has made Kelsey want to be a doctor — and a teacher.

“If kids have cancer, I want to tell them they’re going to live through this and to be positive,” she said.

Right now she’s just excited to become a “real” teenager and move on to middle school.

“We always just take it one day at a time,” Cindi said.

Daily News Staff Writer Lauren Delgado can be reached at 850-315-4445 or ldelgado@nwfdailynews.com. Follow her on Twitter @LaurenDnwfdn.